Dr. Mehta in Albany, NY - Thank you, Kacey!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Drury » Tue Sep 07, 2010 6:18 pm

Hello everyone,

I just wanted to wish you all the very best with your treatment with Dr. Mehta. His team sound very caring and thorough.

HappyPoet,

Thank you for all you info and wishing you continued improvements.

Drury
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Postby aliyalex » Tue Sep 14, 2010 5:09 am

well, i had part 2 done yesterday. my ijs were 90% stenosed, azy had either a stenosis or valve blocked. he used a 8mm balloon to clear it. 14mm was used in lij.

afterwards, i rode home 3 hours. i'm exhausted. i noticed that my stiffer leg is less stiff. it hasn't been this loose in over 5 yrs. the sun seemed brighter and hurt my eyes a bit.

i've been in a wheelchair for 4 years. i suspect secondary progressive for about 5 yrs. i had very subtle symptoms for 20 years.

the only other change thus far is i was able to read without my glasses for a few hours. i will post more later, maybe on the tracking thread when i am less overwhelmed.
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Postby HappyPoet » Tue Sep 14, 2010 9:14 am

aliyalex wrote:well, i had part 2 done yesterday. my ijs were 90% stenosed, azy had either a stenosis or valve blocked. he used a 8mm balloon to clear it. 14mm was used in lij.

afterwards, i rode home 3 hours. i'm exhausted. i noticed that my stiffer leg is less stiff. it hasn't been this loose in over 5 yrs. the sun seemed brighter and hurt my eyes a bit.

i've been in a wheelchair for 4 years. i suspect secondary progressive for about 5 yrs. i had very subtle symptoms for 20 years.

the only other change thus far is i was able to read without my glasses for a few hours. i will post more later, maybe on the tracking thread when i am less overwhelmed.

Aliyah,
Congratulations on your liberation!
TERRIFIC news re decrease in spasticity!
FANTASTIC news re increase in visual acuity!
I do hope you'll start your post on the Tracking thread, but I also hope you take your time. Let us know the page # of your post, thanks!
~Pam
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Postby HappyPoet » Tue Sep 14, 2010 9:28 am

Drury wrote:HappyPoet,

Thank you for all you info and wishing you continued improvements.

Drury

Drury, my pleasure, and thank you for such a sweet wish!
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Postby kaboodah » Mon Sep 20, 2010 7:19 am

2nd Opinion approved. Though I detected a bit of foul play on the part of the Medical Director's part. However, if it is in God's plan, no one can change it. I should hear from Dr. Mehta's office very soon! I'm so excited!! :D :D :D :D :D :D :D :D :D :D
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Boy, have I been out of the loop!!!!!

Postby Kacey » Tue Sep 21, 2010 5:42 pm

I have read and Re-read all the posts twice now. I have been sharing all of your experiences with Michael who sits here with a smile on his face... I am flabbergasted and absolutely elated for all the people who have met Dr Mehta and have fallen in love with him, as we have!
My heart is light, you are all heroes!!!!!!
Poet, I love you! You are such an amazingly strong force for the cause! I am so happy that you have been treated. This is such a great day!!!
i have a feeling Dr Mehta will be even more in demand. Our local paper, the Hudson, NY Register Star interviewed Michael and myself and put it on the front page of today's paper.
You can read about it, if you want to on registerstar.com.
Just trying to get the info out there, but I see that you all are on the ball!!!!
I am so happy, I could cry!
Blessings to you all! Happy Liberation!
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Re: Boy, have I been out of the loop!!!!!

Postby HappyPoet » Tue Oct 05, 2010 6:23 am

Kacey wrote:I have read and Re-read all the posts twice now. I have been sharing all of your experiences with Michael who sits here with a smile on his face... I am flabbergasted and absolutely elated for all the people who have met Dr Mehta and have fallen in love with him, as we have!
My heart is light, you are all heroes!!!!!!
Poet, I love you! You are such an amazingly strong force for the cause! I am so happy that you have been treated. This is such a great day!!!
i have a feeling Dr Mehta will be even more in demand. Our local paper, the Hudson, NY Register Star interviewed Michael and myself and put it on the front page of today's paper.
You can read about it, if you want to on registerstar.com.
Just trying to get the info out there, but I see that you all are on the ball!!!!
I am so happy, I could cry!
Blessings to you all! Happy Liberation!

Kacey, I love you, too! You were the person who found Dr. Mehta and inspired him with your and Michael's story and the research you brought him. Look where we are now, a year later, and it's ALL thanks to you, Kacey. God bless you, Michael, and your children with continued HAPPINESS. I can't wait to see you and Michael at the Roundtable!

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Postby kaboodah » Tue Oct 05, 2010 6:33 am

Isn't this just simply amazing? I have already printed out and copied the announcement, addressed them to my neuro, the vascular surgeon who approved my 2nd opinion only on the basis of "if it gives you hope, go for it', and to my husbands boss, who's daughter has MS but doesn't really know much about CCSVI. It will be hard to attend in the middle of the week for me, being about 3 hours away, but I will do my best! Blessings to you all!

Liberation scheduled Oct. 25 or 26!
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Postby Kacey » Wed Oct 20, 2010 4:37 pm

Is anyone else attending the roundtable at the Egg in Albany on Nov 10th?
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Postby aliyalex » Wed Oct 20, 2010 6:18 pm

i'm not going. i'll be getting stem cells, but i am very glad he is doing it since he missed the symposium organized by de sclafani.

i'll see him in january. aliyah
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Postby kaboodah » Thu Oct 21, 2010 4:09 am

Due to the lovely task of Jury Duty, Dr. Mehta has had to change everyone's appointments. I was scheduled for part one on Oct. 26, but have been moved to Nov. 12. I was going to go on the 10th, but I really want to go to the conference. I suppose two more days won't hurt. I really feel drawn to this meeting. I am having a hard time making sense verbally of it all. In my head I just understand it, but I can't seem to figure out how to explain it to anyone. The words just won't form. Very frustrating! My vision has been absolutely horrible for about the last month or so. My husband and I are working on building a wooden shed at our house. We laugh a lot about how I have no problem hammering a nail as long as he doesn't move and I keep one eye closed. :wink:

My parent's always take my husband and I out to dinner for our anniversary. However, this year (our 3rd) my only request is child care so that we can attend the conference. It will be a great day for celebration! Can't wait to meet Kacey, Michael, and the whole group! Blessings!
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Postby HappyPoet » Thu Oct 21, 2010 5:09 am

I'm not sure I can attend because my husband has relatives coming from Poland to visit the first two weeks in November which will make life very hectic, BUT I will try my hardest to be there!! I hope it will be taped and put on the Internet.
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Postby HappyPoet » Sun Nov 14, 2010 1:28 pm

Hi Kaboodah!

I hope you see this post. How are you doing after your venoplasty with Dr. Mehta? Good thoughts are being sent your way.

Remember to rest, REST, REST -- I cannot stress this enough. And absolutely no stress. Do not post until you are completely rested, RESTED, RESTED.

:)

Edited to say I couldn't find the most recent thread you had used for posting, so I picked this one.
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Postby HappyPoet » Tue Nov 16, 2010 12:02 pm

Dr. Mehta has upcoming openings for CCSVI testing/treatment that are not part of his ongoing CCSVI trial. To recap, he utilizes Doppler US and offers second opinions and follow-up care to patients originally treated elsewhere (including overseas).

I highly recommend Dr. Mehta; he and his staff are very experienced and very caring. Answers to questions can be found by calling the above telephone number.

At the Vascular Roundtable Dr. Mehta held last week, his first patient, Michael Quirk, spoke. Here is a newspaper article written about Michael in September of this year:

Hudson man finds some relief from MS
By Francesca Olsen
Hudson-Catskill Newspapers
Published: Tuesday, September 21, 2010 2:16 AM EDT

Lifelong Hudson resident Michael Quirk is feeling pretty good these days. He can laugh and play with his two young children, Gabriel and Riley, age 4 and 6. His mind is clearer, his mood is better and the multiple sclerosis that made him isolated, depressed and fatigued for so many years has finally taken a backseat to the rest of his life.

“I’m kind of getting back to the old me, slowly but surely,” he said. He has an experimental medical procedure to thank for this, and he wants to make sure as many people know about it as possible.

The procedure opened Michael’s left jugular vein, which had been 80 percent blocked. A balloon was inflated inside the vein, widening the area and allowing for increased blood flow.

“It looked like a straw, twisted,” he said. “That’s two feet away from a stroke.”

Quirk found out about the procedure through extraordinary circumstances: his friend Nick happened upon a video of a Canadian news show online which talked about a Dr. Zamboni, an Italian doctor whose wife was diagnosed with MS. His studies suggested that some MS patients have abnormal blood drainage from the brain and spinal cord, causing nervous system damage (the medical term for the condition is “chronic cerebrospinal venous insufficiency”).

Nick posted a link on Michael’s wife Kacey’s Facebook profile. Kacey immediately went on a search for more information. She researched the procedure online until 4 a.m.

“I was kind of blown away by it,” she said.

She found many accounts on thisisms.com from people who had had the procedure but no solid medical studies with multiple participants — no cold, hard evidence that it would work for Michael.

At the time, Michael was in bad shape. He was in and out of the hospital, constantly dealing with painful flareups from MS. “I was defeated at that point,” he said. “I didn’t care. I was done. I wasn’t the same person. But (Kacey) picked up the reins and didn’t stop running.”

Kacey works in an orthopedic office and decided to speak to one of the doctors there. He suggested she contact one of the surgeons from The Vascular Group in Albany.

“Nobody had heard of it,” she said, but they told her to make an appointment, and bring all of her research. That was when Michael and Kacey met Dr. Manish Mehta.

Dr. Mehta examined Michael, gave him an ultrasound and made an appointment for another examination. At first, “he didn’t think there was going to be a positive resolution,” Michael said.

Mehta said he’d look into it. He had never done the surgery before but the Quirks knew of a doctor in California who had. To their surprise, instead of simply calling that doctor, Mehta flew across the country to meet with him — he turned out to be one of Mehta’s old college friends. “That threw me,” Kacey said. “He told us he was just going to call the guy.”

He watched the doctor do the procedure in California and asked the Quirks if they’d still like to do it. Of course, they said yes.

Before it happened, Kacey said she was plagued by guilt — what if she was pushing her husband into a surgery that wouldn’t work?

“I was scared,” she said. “It was experimental. It was so new. Here I am, having my husband getting this invasive procedure performed without any proof that it actually worked. That was my worry. I’m a medical person, so for me that was a huge concern, but we were both willing to take the risk.”

When Michael had a venogram to see if his vein was blocked, he said it was the only time he ever prayed for the worst. Kacey felt the same way.

“I prayed, let them find something. Let this not be for naught. When (the doctor) came out and told me, I burst into tears. Dr. Mehta was floored that he found anything. He was really encouraged.”

“She wasn’t pushing me,” Michael said about Kacey. “I didn’t care either way. She is a beautiful person. She didn’t want me to be in excess pain if it didn’t work.”

It worked. That was in January. Michael is still feeling better than he did before. About a week after the surgery, said Kacey, “he was a new person.”

“He had this crazy energy. He was running around the house, playing with the kids ... he was like how we met when we were 19. I had that guy back!”

“My attitude towards (MS) now is completely different,” Michael said. Before, “it was just poor me, poor me. There was no color in my life, no joy.”

Before, loud noise was painful and Riley and Gabriel knew to play quietly. Michael didn’t want to talk. He suffered from depression and “a lot of his cognitive skills were dulling,” Kacey said. “He was very lethargic and very confused. He would be searching for words all the time.”

Now things are different. He still suffers from MS — he’s got numbness and he does have episodes where his arms and legs don’t do what his brain is telling them to do. But it’s nothing like it was before, he said.

Since the procedure was done, the Quirk family has been “blown away” with phone calls and messages from others with MS who are extremely interested in the procedure — and extremely inspired that it worked for Michael. Dr. Mehta is now putting together his own medical study on the procedure.

The “old me” that Michael references is actually the young Michael, who at age 18 hadn’t experienced any serious symptoms of MS and had just passed the Navy SEAL fitness test. He was medically discharged during the physical exam, when a Navy doctor reviewing his medical records found that Michael had developed double vision for about a week in middle school.

“He said, ‘you have MS,’” Michael said. After a spinal tap and ongoing episodes, he was formally diagnosed and his life plan of joining the Navy was dashed.

The Quirks both said they want everyone possible to know about the procedure. If you have MS, a venogram will tell you if the jugular vein is narrowed.

“MS is a weird thing,” Michael said. “Weather changes it. Stress changes it. It’s different with everybody. It’s not a broken leg ... but if everybody (with MS) got this procedure done, I think it would be the first time everybody had the same result.”
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Postby CCSVIhusband » Tue Nov 16, 2010 12:23 pm

Such a great story ... Thanks HP ...
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